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Newly diagnosed with nonseminomatous germ cell tumor

pcharb's picture
pcharb
Posts: 5
Joined: Dec 2009

Hi, my name is Paul I'm a 36 year old with 2 kids and one due in Feb. I was diagnosed 12/8/09 it started as enlarged lymph nodes in the neck and the "ball" started rolling from there. I had my first round of Chemo on 12/19 (BEP x4). After chemo it’s off for surgery at Sloan-Kettering in NYC for removal of my left testicle and lymph nodes in the abdomen. I just wanted to reach out and discuss the process as you can imagine this is all a whirl wind.

The actually chemo wasn't bad but as soon as it was over I've became very sick. Nausea, diarrhea. I read the other threads and it was stated "it does get better" and certainly hope so. Please feel free to comment and I hope to get to know some of you and share in our experiences. Thanks

Paul

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Hi Paul,

Most folks have the surgery first & then chemo, did your doc indicated why he wanted the chemo first? It's not unheard of, just a bit different.

The orchiectomy is pretty straightforward & recovery isn't too bad at all. The RPLND surgery is a lot less fun. Expect to be sidelined for an extended period. Make sure they are using the modern, nerve sparing techniques. I suspect they probably are, but it's always good to ask.

The Testicular Cancer Research Center is another resource you should take look at:
http://tcrc.acor.org

LOTS of info on this relatively rare form of cancer on that site.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

TCRC kept me from going crazy because of my frequently elevated alpha fetoprotein (AFP) marker. I could not recommend it more highly!

Rick

pcharb's picture
pcharb
Posts: 5
Joined: Dec 2009

Hey Dave,

Just to respond to your question as to why he wanted the chemo first? (it's been a while since I've been on here)

I consulted with a Dr at Sloan-Kettering (one of the nations leading TC Doc's) and he said since my cancer spread to my lymph nodes they wanted to start my chemo ASAP and with my tumor markers I fell just in the intermediate risk range. He felt that if they did the orchiectomy first it would risk the further prolonging of chemo.

From my understanding in my case the chemo was paramount in killing the lymph node tumors and reducing the markers. With that under control, I could take my time in recovering from orchiectomy surgery with the cancer in check. LIVESTRONG

Paul

slapshot_81's picture
slapshot_81
Posts: 20
Joined: Nov 2009

Paul,
I am 42 with 3 kids, your at Sloan which is #1 in the country I am Dana Farber in Boston which is #2 in the country. hopefully this will help you out. It's racap of my recent experience and treatment.

Back is October I was also diagnosed with germ cell cancer, nonseminoma. I went to get my hernia check, my PCF ordered a CT Scan of my lower abdomen and saw lymph nodes behind my pelivc bone were enlarged. Had a needle biopsy done in late October.

On the plus side it's good they found it somewhat early. It did not start in the testicles, so nothing needs to be removed, it started in my lower abdomen and spread to the lymph nodes. The biopsy came back as embryonic, After almost 2 months of researching my medical records, it was found that at birth I had an undescended testicle which my oncologist said is a precursor for testicular or germ cell cancer.

In Novemeber, just before Thanksgiving I started chemo, the first of 3 rounds of BEP. The chemo wasn't as bad as I thought, except for the wait gain, the hyperness from the decadron and the amount of fluid I got during chemo that made me urinate about every hour around the clock. I found the bleo on day 9 and day 15 to be the worst, the after effects gave me flu like symptoms and fever for about 8 hours after a 15 minute treatment. Tylenol worked the best.

I just finished my 3rd and hopefully final round on 1/15, had a CT scan on 1/21, I see the oncologist this week to hopefully get some good news. If not maybe 1 more round of chemo or surgury to remove any lymph nodes that are suspect.

One thing that really helped was keeping a daily journal. Write down how you feel, what you eat, bathroom habits, how you sleep etc, bring it to your dr. appt's it will definitly help.

Eat alot of strawberries, rasberries, blackberries and the like, it helps with energy levels and antioxidents. Some days after a cycle you may not feel like eating anything, but try to to eat smaller meals during the day instead of breakfast, lunch and dinner.

I am sure you talked to your kids about, had your cries with them, I know my kids helped me through it, we tried to keep everything as normal as possible with the activities and sports. My kids ar 13, 10 and 6. Take some time and have a one on one with their teachers or guidance counselor.

You will get very tired, but the bright side of that is you can nap anytime you want or go to bed as early as you need to. Your body will tell how much rest you need, trust me, before chemo, I ran 30 miles a week and played hockey 3 nights a week, I could get by on 5-6 hours now I need 10-12 of sleep.

Please feel free to e-mail me anytime b.pugliese@verizon.net

hopen this was helpful.

pcharb's picture
pcharb
Posts: 5
Joined: Dec 2009

Just finished round 4 of my BEP chemo regimen on 2/28 and am just starting to get over the nausea. I wouldn't wish that **** on my worst enemy, I don't know maybe I just had a rougher go of it but man it was brutal, 2 hospital admissions and 2 blood transfusions (possibly a third later this week) and my chemo is complete.

Now I'm off to meet with the surgeon on 3/8 at sloan-kettering for tactical removal and nerve sparing lymph node removal for the nodes in my abdomen, and neck!

After reading many posts here I'm starting to get a little nervous about the surgery, The Dr said I'd "be up walking around" right after but as some of you said with the feeling like a gutted perch, etc... I'm scared as hell!!!

As far as tumor markers go, AFP started out in the 400's and is now 3.1 after round 3. BHcg started at 3667 and is now <2. I'm glad all the hell was worth it as in the results go but what a journey!!

If anyone has surgery stories not already shared I would appreciate it. Just don't try to scare me too much. Thanks my TC brothers!! LIVESTRONGE!

Paul

Bigmikedc
Posts: 15
Joined: Apr 2010

Wondered how your surgery turned out. Sounds like you had a rough go of chemo. I start BEPx3 on 4/19/10 and am starting to get worried.
Mike

pcharb's picture
pcharb
Posts: 5
Joined: Dec 2009

Hi Mike,

My surgery was pushed back, it's actually 4/21 this wednesday. I'll let you know how it goes. Stay positive about your Chemo, for me the first two rounds weren’t that bad, it wasn't until the cumulative effect during round 3 & 4 really got to me.

If you have any concerns or questions I'll be more than happy to discuss what worked for me and what didn’t' etc...

Are you also having the RPLND after chemo?

Paul

Bigmikedc
Posts: 15
Joined: Apr 2010

1st round wasn't bad until the 5th day Neulasta shot gave me a baaad headache for the weekend. Also The Bleo booster kicked my ass for the last 4 of 6.5 hrs. Never been so sick. But now i have a vague idea what to look out for in the future. They don't give you all the info you want- it's always "Let's see where this goes." but the Doc says *if* my lymph node goes to normal I won't need the RPLND. I'm afraid that I'm going to end up doing it anyway even tho 1/2 the time they only find scar tissue. Hope surgery went well. Let me know.

MAFFAS
Posts: 4
Joined: May 2010

how long does each round of chemo last ? do you recieve it evry day? is there a rest period between cycles?

slapshot_81's picture
slapshot_81
Posts: 20
Joined: Nov 2009

MAFFA,
I did BEPx3. I was on a 21 day cycle. For example. If I started chemo on May 1st (day 1), I would day 1,2,3,4,5. back on day 9 and day 15 for bleo infusion, day 21 starts the next cycle.

I would arrive at 6:30-7:00am, have vitals, wieght etc. By 7:30 I would be hooked up with IV fluids. They hydrayed me for 2 hours before the chemo infusions. They want to make sure your kidneys are working properly to flush out your body during chemo. By 9:30 or 10am I would be hooked up with chemo, each bag took maybe 90 min to 2 hours. Day 1 was the longest because I got bleo, cisplatin and etoposide. I would usually be done by 1 0r 2pm with treatment.

Day 9 and 15 were bleo infusuions and I would only be there for an hour or so.

MAFFAS
Posts: 4
Joined: May 2010

I also noticed a lump behind my left jaw bone .could this be related to the tc

Bigmikedc
Posts: 15
Joined: Apr 2010

I'm on the same treatment as Slapshot. Probly ought to ask your Doctor about any 'lumps' you may feel. GL

nutweed
Posts: 1
Joined: Apr 2013

Hi

I am male 77yrs old, diagnosed with liver cancer in march 2010. Virtually told to go home and die and given 6months to live  max.

Needless to say I disobeyed that innstruction and took my own course. I have blood test every two months and nearly everything is ok except forAFP levels,

mine is fast approaching 5000!. I take no drugs, the hospital dosent really want to see me again, nor do I wish to see them

I am just trying to find out how high this level can go and what effect will it have, or at what level will I fall of the perch!

Any help or information would be very much appreciated.

Thank you

Colin

 

abelhect
Posts: 1
Joined: Aug 2013

just wanted to thank every body on this blog for all the information provided and helpful.  the doctor said that with three months of BEP I should be good to go.  this is somewhat similar to what some of you guys here went through.

I'm on my fifth day of chemo today.  the main problems I've had so far has been a bit of nausea and insomnia at night.

 

my seminoma was diagnosed by biopsy of a mass in my mediastinum after neck and chest CT scan.  the germ cell tumor

is 8x10 cm big.   afterwards I had a CT of my pelvis and ultrasound of my testis.  nothing was found in my testis thank God but I have a couple of swallen lymph node in my abdomen.

doctor said that cancer should go away with the chemo and shrink without having to operate.  it it's good to hear that many of you are doing good after cancer.   any new updates will be helpful for me that I'm just getting started.

cheers to all!

 

 

 

 

 

 

Saveworld
Posts: 14
Joined: May 2014

How are you doing now? Hope no surgery was required in your case. Even I've hardly heard surgery for mediastinum germ cell tumors.

my mail id - ourearthsaved@gmail.com

 

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